Education, education, education

[JaneC]

We always thought my daughter's first TC came out of the blue. It turns out that wasn't the case, she had previously had what she now recognises as seizure activity, possibly absences, I'm not sure.

She recalls teachers asking her if she was taking drugs. She would have had to be 11 or younger at this time. She had 2 older brothers go through the same school and they should have know this was a highly unlikely scenario. No teacher ever mentioned this to us.

On the day of her first TC she was in a confused state beforehand. The teacher asked her a question and the reply was gobbledygook. So the teacher kept asking questions, more gobbledygook replies, causing much laughter among the rest of the class. My daughter cried recounting this 6 years on.

So much still needs to be done to educate people about E.

No real point to my post, just wanted to get that off my chest. Hope everybody is doing well today.

 

[bighealey]

I was called Spacy Tracy growing up. I even got through Military service. At 54 I began having grand mals, now my absence seizures are noticed as seizures.

 

[Fedup]

JaneC

Afraid your wrong there, this discussion has been in different forms but the one thing that comes to the four is, you are right more needs to be done to educate people. How I am not sure.

 

[Cint]

I've had E for 30+ years and I've been saying the same thing all long. Education is the key. Folks are still very ignorant when it comes to epilepsy and all the different types of seizures. Here in the U.S. where I live, the Epilepsy Foundation and volunteers go into schools to educate kids, teachers and others about E. Surely there is something similar available in Scotland and Ireland, Fedup.

Or have them look at this website:
http://www.epilepsy.com/learn/types-seizures

 

[Fedup]

I have had E for 50 years and like you been saying the same thing with similar ideas. I could not agree more about education, the epilepsy foundation in Ireland (I have no idea about Scotland) or Brainwave was and is a total wast of space, yes the topics look good and you would think (stress think) the people and the help would be worthy of the topic but from my point of view and I did join, it should be Braincave. There is no going into schools or anything sorry to say.

 

[arnie]

I second what all of you are saying. I have done my best to educate the people in my sphere of influence, which been probably only about 500 people in thirty years, but I am hopeful that many of them have spread at least a little of the understanding, so maybe it's done a bit of good in my little corner of the world.

 

[Fedup]

arnie

Well done Arnie and I would imagine you have converted one which is a lot.

 

[JaneC]

Well done Arnie, I'd like to think we've made a little bit of a difference too but wish I could do more.

Cint, the problem is that kind of thing is all very ad hoc when I wish it could be standard. Last year, we had an epilepsy charity come into my daughter's school - but only because we organised it and the school was "kind" enough to fit it in. (Not sure how much difference as when my daughter did a sponsored event for Epilepsy Scotland just one - ONE - of her friends donated). But it only happens when a parent pushes for it - and that's going to be after diagnosis, not before, so it wouldn't have helped with Rosie's initial seizure activity.

The Epilepsy Society in the UK recommend that every school has an epilepsy policy. I tried to persuade my local education department to go one better and have an authority-wide one so that every school had the same good practice when it comes to pupils with epilepsy. They weren't interested. Their current way of doing things works just fine … except Rosie not once but twice slipped through the net and none of the things that should have happened in terms of support did happen.

There was the mental health nurse who assessed her no clue about epilepsy and some very outdated ideas about everything.

I think I'd like to see some TV and cinema advertising campaigns to promote awareness, including some coverage for the fact that having a TC isn't the be all and end all of epilepsy. But where would the money come from? Nobody is interested in raising money for epilepsy charities unless they have or know someone who has epilepsy. Too may other "sexy" causes.

Sorry, feeling a bit disillusioned at the moment about people's lack of understanding of what those with epilepsy go through.

 

[Fedup]

JaneC

That sounds pretty normal when it comes to schools or anything else I am sorry to say even in Ireland.

 

[JaneC]

Indeed. She got extra time in her exams this year for the first time because of her E. First one and they managed to screw it up. :roll:

 

[wants2know]

Sad to say I've gotten more education in here than in any professional circumstance. I have worked with children for 20plus years and the only time I've ever had epilepsy mentioned was when it was already dxd or there was a concern brought by a parent or nurse. It is super important... on any continent!

 

[Fedup]

JaneC

Sorry to say that seems to be the normal way of things, how they manage to screw things up I have no idea.

 

[Cint]

Sad to say I've gotten more education in here than in any professional circumstance. I have worked with children for 20plus years and the only time I've ever had epilepsy mentioned was when it was already dxd or there was a concern brought by a parent or nurse. It is super important... on any continent!

That is very sad to hear. I made kids knew of epilepsy when my two kids were growing up. I was one of the mothers who volunteered once a week to read to the class. So every year I did make sure I read a book for their age about epilepsy to the class. I got the books from the Epilepsy Foundation. I also made sure all neighbors knew about epilepsy. One day my two kids did witness a bad seizure and my daughter had to call 911. Thankfully I had taught them what to do. She was only 7 years old. My son was 3 years. So like you say, education is important, starting at home.